Huntington disease fundraising efforts are off and running with Team Run for HD

Tuesday, July 15, 2014

 
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By Christina Colletta

Although Sara Rockwell’s reality of living at-risk for Huntington disease weighs heavy on her mind, she will not let it slow her down. 

Five years ago on Christmas day, Rockwell lost her father to Huntington disease. Shortly after, the 30-year-old from Rockford, Ill., returned to Purdue University to finish her master’s degree. Feeling distraught from her father’s recent death on top of the mounting pressures of grad school, Rockwell was depressed. 

So she ran. 

Little did she know at the time, the running Rockwell referred to as therapeutic would become instrumental in her fight back against HD. First, it became an important proactive athletic activity for her as someone living at risk for HD. 

Sara Rockwell“It’s a huge motivator for me to stay in shape,” says Rockwell (pictured left). “My dad didn’t respond well to the illness and pretty much just let himself go. Now, I see people with HD doing positive things, like running and working out, and it helps them. Taking care of yourself is a huge part of staying healthy whether or not you have HD.” 

In 2011, Rockwell found another way to use running to fight back against HD: raising money for the Huntington’s Disease Society of America (HDSA). 

“I was just knockin’ back some beers one night and said, ‘I’m going to sign up for a race and fundraise for HD’ and it snowballed from there,” Rockwell said. 

Rockwell’s individual effort to single-handedly raise $2,000 for the HDSA in 2011 turned into a full-fledged running and fundraising team, Team Run for HD, which raised over $15,000 last year. Rockwell credits her best friend and partner in crime Rachel Buck, who she says was instrumental in Team Run for HD from the start, for helping to take fledgling fundraising effort to the next level. 

“If I am the voice of Team Run for HD, she [Rachel Buck] is definitely the brains,” says Rockwell.

Each runner on Team Run for HD shares something in common—they are all affected by Huntington disease. Whether personally, through a friend, family member, or their work, each is dedicated to the cause. 

“We have a tent set up near the start and finish line where the runners can chill out. It’s awesome because it’s like a little celebration with people that share this common experience,” says Rockwell. 

And you don’t have to have cheetah-like speed to take part in Team Run for HD. The team is composed of runners of all experience levels. 

“The thing is, it’s easy to run a race when you’re in perfect shape or when you’re a runner,” Rockwell said. “One year, a girl [on Team Run for HD] had an ear infection and bronchitis, and all she kept saying was ‘I can’t quit, I have to do this.’ We all finished the last mile with her. That is so impressive to me, someone so determined and dedicated to the cause, just running through it.” 

Joining Team Run for HD for the first time on July 19 for the Chicagoland Sunset Half Marathon is UI HDSA COE Public Relations Coordinator Sean Thompson. Although Thompson is a veteran runner (this race will be his tenth this year), he says running for Team Run for HD makes this race special. 

Sean“Having worked for the UI HDSA COE and getting to know so many people from the HD community, this cause is extremely important to me not only professionally, but personally. It’s close to my heart,” says Thompson (pictured right). “When I need a bit of energy or that extra push to keep going, thinking about the cause will motivate me to push harder. I’ll be thinking of all the amazing people I’ve met in the HD community as I make my way to the finish line.” 

Thompson recognizes the importance of Rockwell’s fundraising efforts for the HD community. 

“Working at the UI HDSA COE, I know firsthand how important these types of fundraising and awareness events are,” says Thompson. “There’s a lot of promising research going on and without people like Sara fundraising for organizations like the HDSA, that research wouldn’t be possible.” 

With no previous fundraising experience, Rockwell says she has learned how to manage Team Run for HD as she goes. Although she admits it is a lot of work, she says it’s worth the effort. 

“Before or after the race, or when I’m running in my Team Run for HD t-shirt, it is so gratifying when a complete stranger comes up and asks me how they can get involved or tells me their experience,” says Rockwell. “If I’ve done nothing this entire year, if I reached out to one person, that is enough. The little successes fuel me.” 

Rockwell encourages others to get involved, whether with Team Run for HD or their own fundraising ventures. 

“My experience has been that people want to help, they just don’t know how,” Rockwell said. “It’s very hard to know where to start. If you want to get involved, whether you are a runner or not, there are ways you can help.” 

Rockwell hopes eventually, there will be satellites of Team Run for HD across the country. 
“If there was a Team Run for HD Cincinnati or Team Run for HD Detroit that would be amazing. I would love for it to get so big where I can’t handle it anymore.” 

Outside of Team Run for HD, Rockwell holds smaller fundraisers at local restaurants, bars, and music venues.

“We are trying to be the face of this terrible disease that a lot of people don’t want to talk about, or when they do it’s sad or depressing,” says Rockwell. “We want people to know that yeah, it’s a terrible disease, but there’s a lot of really amazing things going on to combat it and you can be a part of that effort.” 

To find out how you can get involved with Team Run for HD or to donate, visit www.teamrunforhd.com or email Sara Rockwell at teamrunforhd@gmail.com